Cholesterol Forum - Alports Disease In Women,,,not Just Carriers!!!! Lets Learn!


Alports Disease In Women,,,not Just Carriers!!!! Lets Learn!

Medical Questions-> Health Forums -> Cholesterol -> Alports Disease In Women,,,not Just Carriers!!!! Lets Learn!

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KimmyK

New User, Becoming EHEALTHy

Joined: 20 May 2005
Posts: 36
Location: Kentucky

Alports Disease In Women,,,not Just Carriers!!!! Lets Learn! Posted: 10-18-05 20:54pm


Hi, im 43yr old woman recently diagnosed with iga nephropathy,,then later, given the accumalitive diagnosis of hearing loss,,was told I had alports. I wish to take away the fear. I wish to show you how to beat this! Its real, that I dont make the mistake of thinking. I had the high cholesterol, protein out of sight, low bloodpressure (that I hear from so many, but docs seemed lame about).......And fear? Isnt that the worst? What if I die? What if I dont get a kidney? What if I develop heart disease as a result then disqualify as a transplant recipient? If youve ever felt any of these things,,feel free to email me at [email removed]. Im considering writing a book,,,not for monetary gain, but each person that adds to helping others will be rewarded. We dont need to be scared , we need to fight........Can I get an amen? Luv ya in the lord, kim

JessicaLK

New User, Becoming EHEALTHy

Joined: 20 Oct 2005
Posts: 1
Location: Maine

Questions About Alports In Women Posted: 10-20-05 07:48am


Hi, i'm a 21 year old woman. I was diagnosed as having in childhood, but was thought to be nothing more than a gene carrier from my understanding. None of my physicians seem real knowledgable about the condition. My father is 42 and had kidney failure by 23 and has had dialysis for years along with 2 kidney transplants. The current one is working! However, my question is about me. I seem to do fine most of the year but when I get the common cold or the flu, my lab tests get all out of wack. My urine becomes full of protein, occult blood, bilirubin etc. I also seem to get so much sicker than the average person. Flank pain is horrible and it takes me much longer to recover from even the smallest illnesses. Do you know anything about this? I would appreciate any information I can get. Thanks, jess

KimmyK

New User, Becoming EHEALTHy

Joined: 20 May 2005
Posts: 36
Location: Kentucky

Flank Pain Posted: 10-20-05 12:47pm


Hi jess. It would seem to me that your not just a carrier. I could look it up but ive researched alot of this and believe it or not,,,simple colds,,and especially sore throats kick up symptoms such as youve mentioned. You need to ask your physician to do a 24 hr urine,,,and to do this every 6 months. This will show whether your progressing or whether you remain a carrier. The flank pain is not usually felt with carriers. Something is definately going on with you. Asking for a referral to a nephrologist will give you insight on every aspect of your kidneys. Flank pain is intense and feels like your ribs have a ball bat attacking them. Talwin is a safe medicine that helps aleve some pain. Avoid taking anything with acetometaphin (aspirin) as this further damages the kidneys. An ace inhibitor can be prescribed to guard your kidneys from further damage. Taking fish oil once a day can retard the progression of this disease up to 1-2 yrs........So do it!!!!!!!!!! smile im not a doctor but you are symptomatic which leads me to believe that your not just a carrier. Please seek a referral to a nephrologist. Pain medication such as loratab has tylenol and is safer for your kidneys. Exercise works because what you cannot urinate out (excess protein) you can sweat out,,and this also reduces the flank pain. Keep me posted! Kim

kristin8077

New User, Becoming EHEALTHy

Joined: 30 Apr 2006
Posts: 1
Location: illinois

Alports Posted: 04-30-06 20:43pm


Hi there! I am 26 years old and I was born with a kidney disease. When I was 9 they did a biopsy but could not come to any conclusion as to what kind of kidney disease I had. I had a little girl four years ago and she started to have blood in her urnine so I took her to the doctor and they relooked at my biospsy results and concluded that I have alports. I have had high blood pressure since I was 9 and high cholesterol since I was 21. I have always been very healthy as far as eating and excercise go. Noone in my family has any kidney problems what so ever so I dont know whre this came from. I recently had my urnine tested and there wasnt any abnormal blood or protein whenthere had been in the past. Ireally want to have more children but I was told if I had a boy it would be very bad so I havent' seeked genetic counseling because I do not currently have insurance. My daughter is getting yearly 24 hrs and blood drawn and a yearly visit to the nephrologist. We dont really know anything yet. The doctor wanted us to have a dilated eye exam on her to see if her eyes have the shape the people with alports can have but I dont even have that eye shape. I know that she is different but I am not willing to put her through the test at this time I dont think that it is neccesary. I guess I am not really asking a question just putting my information out there for any opinions. Take care kristin

melodyhall

New User, Becoming EHEALTHy

Joined: 13 Jan 2008
Posts: 1

Flank Pain/alports Posted: 01-13-08 14:17pm


I have been having abnormal urine tests for the past 2 years. It stated with going to the doctor due to pain on my right side, seemingly inside my lower rib cage and in my back. The tests showed blood in my urine and varying amounts of protein. This past November I had a kidney biopsy (as per the Nephrologist). He said the results indicate that I probably have Alports. He said he was reluctant to diagnose this, since it is a genetic/hereditary disease and I have no family history of it. During all of this, no one listens to me about my pain or my inability to get over the simplest cold. Things that most people get over in short period of time, seem to drag on for me and my side is constantly uncomfortable. It seems to go from a sharp stabbing pain to feeling like I am leaning back on a baseball (hard inside). I need help!!! How do I get the pain to subside? Why hasn't my doctor associated my discomfort and pain with what is going on? How do I get my doctor to listen to me about the pain I am experiencing along with not feeling good (most of the time)? Any help is appreciated, Melody